"Many parents don't even know what tube-feeding is when they show up to deliver a baby. In fact, for Samie Perez and her daughter Miah, now three years old, they went home from the hospital thinking that she had feeding difficulties - but nothing that out of the ordinary. But "no matter what we tried, she would not eat anywhere near the amount she needed to consume to survive," says Perez."
"Before she turned two months old, Miah was back in the hospital, which is where the family learned that she had oropharyngeal dysphagia, a condition that affects how the mouth and throat work together to swallow, likely stemming from a rare anomaly in her neck and spine. An NG (nasogastric) tube was initially used to provide nutrition, but it caused additional complications. So when Miah was eight months old, she underwent surgery to place a G (gastrostomy) tube directly into her stomach - marking the beginning of the family's tube-feeding journey."
"That didn't mean things suddenly became simple - or easy. After all, they'd been sent home with less than an hour of training on how to tube-feed, and Perez found herself with her infant, a toddler, a steady stream of doctor appointments, and zero answers as to what was behind Miah's feeding issues. Miah threw up after almost every meal, leading the family to try a ton of different formulas and undergoing various medical tests. "We constantly rearranged our lives around new medicines and regimens, and just prayed she kept the food down," says Perez. "She was frail, fragile, and malnourished.""
Tube-feeding families navigate unpredictable daily life while supporting infants and children who cannot meet nutritional needs by mouth. Some children develop conditions such as oropharyngeal dysphagia, prompting nasogastric tubes and later gastrostomy tubes when complications arise. Families often receive minimal training at discharge and then face frequent appointments, repeated testing, formula trials, persistent vomiting, and malnutrition. Caregivers must constantly adjust medications and feeding regimens, coordinate medical care, and provide intensive hands-on support for fragile children. The tube-feeding journey becomes a sustained, complex responsibility requiring resilience, adaptation, and ongoing medical coordination.
Read at Scary Mommy
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